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Jiffener
01-14-2009, 06:26 PM
I was diagnosed last July with mixed connective tissue disease (MCTD). I wouldn't wish this on my worst enemy. Like many of you, I take plaquenil. I have come to hate the question "How are you feeling today?". Sometimes I feel like I can't answer truthfully. I feel like people just think to theirselves "There is something always wrong with her."
I take my medicine everyday. Sometimes I get so angry when its time to take my medicine I want to cry. It's like a reminder twice a day that my life will never be the same. I use to not have to think twice about getting off of work on a Friday and driving for 2 or 3 hours just to get out of town. Now if I want to go out of town, everything has been thought about and planned. I can't do "spur of the moment" anymore. It sucks!
There is a lady at work who told me "just don't think about it.". Excuse me! I told her that it would be hard to "just don't think about it." Forgive me if I'm wrong, but how many of us wake up feeling great in the morning? Not me. I wake up and start counting the hours until I can come home from work and go to bed. And I HATE that.
So, the new girl on the block is now going to stop whining. Thanks for listening to me. It's nice here. It's nice feeling like I have someone on my side. :D Thanks whole bunches

rob
01-14-2009, 07:05 PM
Hi Jiffener,

Welcome to our group. I just want to say hello. Brain fog has put a damper on me for tonight, but I wanted you to know that I understand what you are saying, and I understand completely. Not being able to do spur of the moment things. And the "something is always wrong with her, or him," really hits home. Please know that you are welcome here.

Rob

Saysusie
01-15-2009, 09:01 AM
Hi Jiffener;
Welcome to our family :lol: Yes, it is difficult to know that our lives have been completely changed because of Lupus and its many over-lap illnesses. Like you, I dread having to take my medications. I have a regimen, 3 times per day for meds. I get through the morning regimen fairly easy (only six pills), and the afternoon regimen isn't so bad (only 3 pills). However, the bed-time regimen is always the one that can bring me to tears (12 pills). I sit and stare at them for hours before I can get up the will to take them. It feels as if I've consumed a gallon of water just trying to get those pills down each night (then, of course, comes the frequent bathroom visits due to the amount of water I've had to drink to take my night-time meds). One of the things that causes me such pause is the thought that I am going to have to do this for the rest of my life!
Then, I think.....what would my life be like if I didn't take my meds? How many hours out of a 24 hour day does it take away from me to take my meds? How many hours out of a 24 hour day would I lose if I did not take my meds? Even though I have limitations while on my meds, how much would that be increased without my meds? While I can't do all that I once did, what am I able to do because I take my meds?
I have stopped being angry about my disease and/or about the co-existing diseases that I suffer from. I have these diseases and there is nothing that is going to make them magically disappear; there is nothing that is going to take me back to where I was when I didn't know that I had these diseases. All that I can do now, is try to live my life the best that I can IN SPITE of these diseases; to take care of myself and be diligent about my health so that I can maintain a relatively normal lifestyle. I will never be able to do what everyone else does, but I make sure that I am able to do what I want to do to the best of my ability (bearing in mind that I must make accommodations due to my health).
There is never a moment when I don't think about my illness (because the various symptoms won't allow me to), but I get a form of pleasure out of planning how I will do something that I want to do and then I get immense satisfaction after I've successfully done that! Yes, we can no longer live our lives on the spur of the moment, but that does not mean that we no longer have joy in our lives. Our joy is what we make it and all that we do is a result of how we think and the choices that we make. We've all had to make changes so that we can find some joy in our lives. You will find that everyone here understands how you feel and the people here are more than willing to give you advice, support and understanding to help you through this.

Peace and Blessings
Saysusie

Angel Oliver
01-15-2009, 10:20 AM
Just to say welcome to this site and i so relate to what you wrote.When i am more awake i will write again. My best one is when they say how are you and you begin to tell them........and you see them glaze over as if they wished they'd never asked...so funny.....but so distressing! You stay strong my friend, we all understand here what you are going through.

Love and hugs
Angel.xxxxx

ana1.40
01-19-2009, 06:32 PM
what is MCTD - mixed connective tissue disease...what is this? Is it life threatening? i saw my rheumy jot down the possibility of me having that, i didnt asked questions about it...was caught up worrying about the possibility of lupus! :cry:

Danica01
01-20-2009, 03:13 AM
Welcome! I hope you are meeting lots of new people and are enjoying the love and support we all have to give :wink: My life was changed the day I found this sight. I was no longer alone :!: I am very lucky in that my family is 100% supportive and Tim is the love of my life and is amazing through all of this :) But to actually get to share what I am going through with others who are going through the exact same thing, words can not explain this joy :!: You will always find someone who is going through what you are going through and they are always there to share and give advice on how they are getting through it. You will never be alone and we are always here to listen to you when you are having a difficult time and we will always be here to celebrate the good time :wink: Welcome to the forum and welcome to our family :!:

Amy_B
01-20-2009, 08:39 PM
Oh, I totally get what you mean by that!!! I usually act cheerful and say I'm doing fine even when I feel so tired or have a bad headache or fever... I just keep on with a smile on my face. When I told a couple of people at work that I have lupus, they were surprised because they thought I always seemed fine.

I realized two things: first - people don't really want to hear about my ailments. They don't know what they can do to help me, so they feel awkward or uncomfortable when I complain. Second - everybody has things going on with them that cause suffering. We don't see their stress, sorrow, fear, pain, etc.

Most people don't even know what lupus is, but they all know some cousin's wife's sister (or someone) who had it. My sister said she had a secretary once who told her she had lupus. My sister had never heard of it and was secretly worried that it was something contagious! Poor sis, now she has rheumatoid arthritis and I have lupus.

Even my husband doesn't ask how I'm doing anymore, but he does freely complain about his own aches and pains. Then I feel irritated because I think he couldn't possibly feel as bad as I do, and I still function. But then I remember that everybody suffers from stuff, too, not just me.

Hey, do you ever wonder when something is hurting or whatever, if it's the lupus or something that you would have had even if you didn't have lupus? Like, is this headache just from tension... or a sinus infection?

iseedeadmonkeys
01-21-2009, 05:19 AM
hey there new girl on the block :d

welcome to the forum:)

yeah no excatly what your talking about, i swear ppl call me sick note lol so be it, im fed up with the talk behind my back, you know who ya real friedns are you will see,

take it easy and chillaxe here

xx

Bama
01-21-2009, 02:56 PM
I so understand the pain when people ask you how you are doing. Usually I just smile on the outside, but it make me want to cry on the inside. It really stinks when doctors don't seem to understand fatigue and how you have to plan your entire day. Just because you may look good for the moment doesn't mean you will struggle later that day.

Check out the spoon theory. I emailed it to some of my close friends and it has helped them understand what I go through. They really want to understand, but they have no way of grasping what it is like to live with a chronic illness.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Saysusie
01-24-2009, 11:12 AM
Hi Ana1.40;
MCTD (Mixed Connective Tissue Disease); This is what doctors will diagnose a person with when they have signs & symptoms of several auto-immune disorders (not anything that leads to a diagnosis of one disorder). These diseases don't have a unique set of signs and symptoms. Instead, people with mixed connective tissue disease usually have signs and symptoms of lupus, scleroderma and polymyositis, including:
* Fatigue
* Muscle weakness
* Joint pain
* Joint swelling
* Swollen fingers
* Mild fever
* Raynaud's phenomenon blood vessel spasms that interrupt blood flow to the fingers, toes, ears and nose.

The disease is part of a larger group of diseases known as autoimmune disorders. When you have an autoimmune disorder (like MCTD & Lupus), your immune system responsible for fighting off disease mistakes normal, healthy cells for intruders. As a result, healthy tissue in your body is damaged, causing signs and symptoms of disease.

Peace and Blessings
Saysusie